Ursula and I are in the same business as the people who are working to save her life in NY. We have some things in common. We speak the same language, for the most part. But there are times where its hard to fathom that we exist in the same universe.
Ursula has an appointment at the clinic this upcoming Monday. 4 days prior to that appointment we got a phone call telling us that our account had run out of funds and we needed to send another significant sum of money by Friday, or they would cancel the appointment. If we couldn’t pay, they would discharge us from the clinic.
If you don’t remember, when this trial started about 18 months ago, they asked us to pay up front a large deposit, one that was intended to cover the entire 24 months of the trial. It was supposed to be used for the cost of doctor’s visits, lab tests, and diagnostic imaging, all of which was set out in a schedule based on the trial protocol. The total cost for the trial should have been relatively straightforward to estimate. In spite of the fact that we haven’t done anything out of the ordinary, though, we have run out of funds from that initial deposit.
My first instinct was to go back and look at the billings to see if they had made an error, or if we were being overcharged for something and in that moment it hit me:
There would never be any recourse because they can charge us whatever they want.
If they decided that doctors visits should be worth 25% more this year, am I going to tell them they are gouging us? If they say they need an additional blood test because its necessary, could we really say no and remain in the trial? But the price for that blood test is set by that hospital. And the profit that is made from that blood test is made by that hospital, which employs the doctor that ordered it. This conflict of interest never ceased to amaze me, and while it annoyed me on an intellectual level before, it landed much harder this week.
The people who conduct business for the hospital are not the doctors. They are administrators. People who are charged with the task of making sure that everything gets payed for. And the feeling that we got from them was very cold. If we didn’t have the money, we wouldn’t continue. It was as simple as that.
It has to be said that while this is uncomfortable for us, there must be countless others who are faced with this situation every day. And for them, they are going bankrupt, or worse, they are going to die because they can’t access the help any more. In so many ways we are lucky, but the most important of these is that we don’t have to make choices between poverty and wellness.
As I try to mount a angry response to a health system that literally ruins lives while it saves them, I can hear the voices of those defending the other side of the argument: if this system didn’t exist, there would be no nivolumab saving Ursula’s life. Is that true? Are the medicines and the research driving them only available because we allow hospital systems to decide the going rate for saving a life? I suppose that might be true. This drug wasn’t developed in a public system, it was developed in the United States. By American companies. Without them, my wife wouldn’t be alive for me to be bitching about the rates they charge.
In my heart, there is a better way. A way to reward the doctors and hospitals that do this good work, but that prevents the gross conflicts of interest that exist within the system. For this reason and many others, I will never work in the US. I am proud to participate in a public system that serves the sick as its only priority. In the same breath, though, I am angry at a system where I have no hope for fair treatment and so grateful to have the help that it has provided. So messy and so bittersweet.